Where I’ve been . . .

I haven’t been blogging, obviously.  2010 has made it’s mark on my family in many ways.  There are great things . . . I have 4 awesome kids and one great husband, my husband has a job and we have a house and more blessings than we deserve.  But, there has been a cloud.  And I admit I have let myself stay under it.  I haven’t blogged because I can’t find any humor.  Nothing light and carefree to talk about.  Every thought and emotion I have is heavy, and I have been dragging it around for the last 6 months until most days I am out of breath.  I am traveling a road I am not familiar with and never took the time to learn about because I always thought “not me”.  I regret my lack of interest in this area now.  It is too much to catch up on, too much to take in now that I am on the journey.  The journey is this, I am fighting for my son.  Fighting for who he is and who he will become.  There is no time to waste, every moment must be accounted for and there is no rest.  You can’t rest when there is “something” that is eating away at the next generation of men.

My journey began approx 6 months ago.  Still reeling from the sudden, unexpected death of my father in law I was trying to get my family and home back in order.  It was then that I recognized some red flags.  Huh, red flags,  I didn’t realize how normal those words have become to me.  It was with Justin, 18 months old at the time.  I suddenly became aware that something was “off”.  He had no words.  I mean really, NO words.  Not only that but he had no communication at all.  No pointing, no gestures, no attempts to communicate.  Just crying.  Lots of crying.  He appeared to be a very unhappy child.  He was also very clumsy.  By clumsy I mean he would be walking and just veer off and walk into a wall.  Of course this could be vision related.  Right?  He even went through a spell where he refused to walk on certain floors.  I was convinced he had depth perception problems, and maybe he did.  But who would know, after all he couldn’t talk.  So, the appts began.  First with the pediatrician, then opthamologist just to make sure his glasses were the correct prescription.  Then we got the referral to Babies Can’t Wait, the Early Intervention for GA.  Never thought we (I) would be there. 

Evaluations started.  I was more concerned about his poor sense of balance and toe walking.  They were more concerned that at 18 months his imitaion skills were that of a 6 month old.  I was worried about his inconsolable crying and night waking.  They were concerned that overall he scored at the age of a 10 month old in communication.  So, we were given “services”.  Special Instruction therapist would be coming to our house once a week, sometimes more.  And Ms. Cindy entered our lives.  She began teaching Justin sign language and gave me daily skills to work on.  LOTS of work!!  Every skill was to be done 5 times a day and we kept a log.  Justin had to score at least 80% for 3 consecutive days to be checked off.  We slowly began to get some words.  We literally taught him how to point.  I mean using our hand to form his hand into a point gesture, and then teach him appropriate times to use it.  He was making great progress.  But there was more.

Other behaviors began to reveal themselves.  Rocking, to the point of having bruises on his back.  Mouthy behaviors that included taking bites of things made of foam and sticking his entire hand in his mouth.  He became more and more dependant on me and his routine.  Less ability to adapt to change.  He “needed” things, like to scrub his head on the carpet when he was upset.  His therapist said NO!  These behaviors were not “socially acceptable”.  Ahhh, another new phrase that has become all to common in my vocabulary.  I began to hear things like “In THESE KIDS . . .”  Huh?  Who are “these kids”.  Well, now I know.  Justin is one of “these kids”.  “These kids” have similiar problems with no real known cause. ” These kids” are our future and yet without aggressive intervention they may not be able to function in society. 

We were instructed to not allow these behaviors.  So I began my vigil.  “Justin, NO rock!”  “Justin, NO mouth!”  Sometimes I said it 100 times a day.  I redirected, and then redirected again, and then again.  The reason being is that these behaviors tend to escalate in “these kids”.  I was able to see that when I tried to put Justin in preschool.  He cried continously while he was there.  The teachers had to call me everyday.  His “mouthy” behaviors escalated into him biting himself.  One day when the teachers called me and I went back to the school I found him crying, rocking, and with bite marks all over his hands.  I went and told the director, “We’re done”.  I had to pull him out that day.  Too much regression.  I felt like everything we had worked for, all the ground we had made, was lost.  Just like that.  Honestly, I cried.  Not because of what had happened but because I didn’t know when it would end.  What about next year?  Would he ever be able to go to preschool? 

And I forgot to mention Ms. Shirley.  She is his wonderful OT, another “service” he qualified for.  She comes weekly and brings her big orange ball for Justin.  He is somewhat obsessed with balls, all except for Ms. Shirley’s.  He hates her big ball and cries when he has to sit on it for his “exercises”.  He shakes, cries, and says “all done”, but there is no rest for him.  At 2 yrs old there is more required of him than there is of many adults.  And I have to force him to do it.  Inside I just want to grab him off the ball because it scares him, but I can’t.  I can’t look at today, but I have to look ahead to where he needs to be.  I constantly have to remind myself, I am not raising him to live with me, but to be a self sufficient adult.  So, we sit on the ball.  Sometimes together, sometimes just Justin.  When he shakes outwardly I shake on the inside, uncertain of our future.

That is a very brief summary of what has taken place.  Justin is his own little person.  Very loving and sweet with his family.  He is spoiled by me and his dad and we don’t apologize for it.  He has many other issues that I haven’t even begun to go into here.  There really is no point.  There are the people who look at him and say “There is nothing wrong with him!”  And I agree, to me he is perfect.  But I also am raising four kids and it would be negligent of me to ignore the “red flags”.  I have been encouraged by his therapists to seek a formal evaluation.  I have researched and have decided to go straight to the top.  Justin will be seeing a developmental pediatrician in Nov.  This doctor has been around for about 30 yrs and is considered one of the best in Atlanta.  She doesn’t accept insurance and we will be required to pay the “full” amount up front.  Is is a stretch, yes.  A sacrifice, no. 

What will the evaluation bring?  I can’t say for sure, but I have an idea.  I am spending my time reading and preparing.  One thing I do know is that God gave me Justin for a reason.  And I may appear to be in hiding, but it’s really just because I am processing and planning.  Planning my attack.  I don’t for one minute believe that God spared Justin’s life when he was 7 wks old  and gave him a full recovery only for him to have to face and struggle with the challenges of autism spectrum disorder.  Whatever comes, I will be there.  And I will see him through.

9 thoughts on “Where I’ve been . . .

  1. Heather, I am amazed by all this. I had no idea what you have been going through. I will pray for strength, joy, and determination for you in parenting Justin. God bless you and Nathan.

  2. Since I’ve read this I’ve come back several times to comment, but haven’t because I really didn’t know what I wanted to say. Even though I’ve known a lot of what was going on reading it all here from your perspective was pretty emotional. All I can really say is that I think Justin has the BEST parents in you and Nate. He is so lucky to have to fight for him and to make sure he has the best possible care. I know your days are exhausting from such constant vigilance, and I am in awe of what you accomplish with him each day. I will pray for energy and strength for you and guidance in all of your decisions. Love you you, Nate, and Justin (and all those Arwood babies).

  3. Papa and Nana will be there for J.T. also! How bad can it be when, at lunch today, he tapped me on my arm and said, “Nana, na’kin, pease?”

  4. Justin, Grandmother and Bip love you and think of you all the time. Heather, you know how we feel about you, Nathan and J’s 1-3. Justin is a lucky kid to have a family like his. Be strong…

  5. Heather, thank you for sharing this. I am so glad we now have the opportunity to pray for you and your family. You are an awesome mom and we pray for your strength and guidance. Love and blessings to you all.

  6. Praying for you! You are an amazing mom and awesome family – thank you for sharing so we can be praying!

  7. Heather, I had NO idea you were going through all of this? God Bless you and your family, and the journey you are on. I will definitely keep you all in my prayers, and if there’s anything I can do for you…don’t EVER hesitate to ask?!

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